Wednesday, July 31, 2013

Maggie gets all of her nutrition through a gastrostomy tube. The tube is in her stomach and I just attach an extension and pour her medically prescribed food down it. Of course I wish it weren't that way. Eating and drinking is very important to us socially and tube feeding is not part of that. But we can keep her satiated and healthy, so the social thing is secondary. And, it is easy as pie, in all honesty.

The tube was placed the day Maggie was born because her physical anomalies made it impossible to get food into her any other way. There were several anomalies both above and below the stomach that were eventually repaired surgically. By the time they were repaired, though, Maggie was three months old. The natural ability to swallow had faded and she had to learn it. It is a complicated motor function and because of the Cerebral palsy, that we really didn't know about yet, she could never master swallowing. So the tube stayed.

We tried for a long time to do regular feeds. She never could handle liquids, though she used to take small bits of baby food. She loved pureed fruits, but even then it was only a bite or two and she was overwhelmed by the sense of things in her mouth and exhausted by concentrating so hard to swallow.

(Note, swallowing is extremely difficult. We all do it naturally, but if you think about it, which Maggie had to do, it's very difficult. Try to swallow five times in a row and you will see what I mean.)

Maggie's tube is just a part of her. She still feels hungry and demands to be fed just like any other kid. It's just that both her way of eating and her demands are done a bit differently. Lately if her talker isn't attached she just pulls up her shirt to show me her tube when shes' hungry. It took me a while to realize what she was doing, but now it's just the norm. It's pretty hilarious.Here is a reenactment for you.

If her talker is attached she just uses that. Maggie eats the same thing every two hours. 5 to 6 ounces of Vivonex RTF (ready to feed). It does not resemble anything you or I would eat. Yet Maggie figured out very early to ask for the appropriate meal at the appropriate time. (breakfast, snack, lunch, snack, dinner, snack) That still blows me away. She just did it this morning. Actually she does it several times a day. She starts with simply demanding it and I make her say please. Then she starts nagging by adding mom mom mom mom.

We are working on a "Thank you, that was delicious" sentence, but Maggie won't tell a lie.

Tuesday, July 30, 2013

This is not historically true. When my kids were in school it was a break in the routine and we always managed a week or so away with various shorter trips thrown in for good measure. When I was college age, it was time for ROAD TRIPS! We would pick up and go at the last minute because two of us had the same days off. Didn't matter where we went, we just went. When I was a kid summer was SUMMER!! No school! no schedules!

Now with Maggie's ever increasing nursing needs, a week away is impossible and short trips are unwieldy, there are never two days off in a row. Ever. It's Oh NO, it's summer! no school and no schedule. What in the world are we gong to do to fill the time?

This reality hit home Sunday. Eddie and Grace were in Monterey with Grace's parents and Tim told us Saturday he wanted us to head down there (The boys haven't seen each other since before Christmas.) Monterey is about 2.5 hours from here so it's doable as a day trip. Long day, but doable.

Not doable for Maggie, though. It's too much. Too much for her. Too much for me. There was a nurse scheduled to work for 8 hours, but that wasn't enough to get there and back and have any kind of visit. Steve offered to stay with Maggie so I could go, and if it were the school year I would have jumped at that. But not in the summer. I would be wrecked for Monday and I have to be ON for Miss Maggie. It was easier to just stay home.

Steve and Tim went to Monterey.
Maggie and I hit the museum.
Again.

Sunday night my sister Joan called saying she unexpectedly had Thursday and Friday off and was making an impromptu trip to Tahoe. Lake Tahoe is Summer to me. We spent every summer there when I was a kid and my parents had a house up there that we used regularly until they sold it in 1999. My sister Ellen and my brother Pat have been posting fantastic pictures of hikes they are taking together and separately in the Tahoe area. I have been drooling over those pictures.

Joan asked, Did I want to join her? A road trip? To TAHOE? Why yes! Yes I do! With every fiber of my being. The San Francisco fog is particularly thick this year and the thought of sun on my face is almost intoxicating. But...I can't. There are 8 hours in each day that don't have nursing coverage and Steve is working and Tim can't do the nursing procedures. Besides, Tim started his new job on Monday.

So I had to pass.

I don't mean to whine, really I don't. I feel very lucky that we have so much nursing support because that's the only way Maggie can stay at home. It's the irony that summer, when most people get to enjoy a little freedom, I am the most stuck.

And what about Maggie? I worry about Maggie getting too bored. We do the same things all the time. We listen to her music. We go to the mall. We go to the museum. We go to Safeway. we go to the park. Today we are going to Best Buy AND Safeway, just to keep things interesting. Maggie needs to break up the routine as well. Camp was a great diversion, but that's done now. Of course Maggie has the uncanny ability to revel in the present. She is delighted to be wherever she is.
And she's with me.

Today is July 30. School starts August 19. It will be the Maggie and Mom show for the next 21 days.

Friday, July 26, 2013

This is the end of Maggie's favorite week. She has been attending Girls Rock Camp as she has for the past several years. It is run by California Children's Services (CCS) for teenage girls. Because they are in CCS, all of the girls have some sort of "qualifying medical condition" or they wouldn't be there. Maggie - as always - represents one end of the spectrum. At the other end are older girls who have either overcome their issues, or learned to get along in the world despite their differences. Most of the girls fall somewhere in the middle.

The disabilities are mostly physical, but there are certainly a lot of social/emotional issues as well. Camp presents a rare opportunity for these girls to hang out with peers and just have some fun, make some crafts and learn a few things. Mostly they just have fun.

This week Maggie painted her nails, made lip balm, learned about makeup and skin care, discussed relationships, made tie-dye, listened to music, made jewelry and a box to put it in. She learned about manners and had fun doing it. She also had fun taking pictures, as I wrote about the other day.

Bright Pink! And not smeared!

Maggie can't reach the middle of the table, but she's right there with the other girls.

Barb helping Maggie with the Mod Podge (remember that stuff?)

Making Jewelry

Today is the party and we have to say goodbye. One of these years Maggie will be too old for Girls Rock, but thankfully not yet.

Wednesday, July 24, 2013

Maggie is really using her new IPAD. We've been doing it together up until now. I had to keep one hand on the IPAD at all times to keep Maggie from flinging it across the room. We were waiting for the mount to arrive so that we could secure it to the pole that holds her talker. It arrived yesterday and the thing is SLICK!

We are still waiting for the switch interface to arrive. This will allow Maggie to use her switches (buttons) that she uses to operate the dynavox. The switches she has now will plug into the interface which then connects wirelessly with the IPAD. There will be no stopping her then.

Of course there have to be apps that work with the switches and I have downloaded several, but we will see how much Maggie actually utilizes them.
Even without the switch access, she is already using one of the new apps like crazy. I have to thank Diane Tom, an OT at CCS for this one. It's called "Big Button" and it allows her to use the camera function of the IPAD by pressing anywhere on the screen. That was the best $2 I've spent in a while.

Maggie was having a ton of fun with that today at Girls Rock! Camp. If you put the IPAD so the camera points at the user, Maggie can take pictures of herself. And that's just what the world needs, more pictures of Maggie.

Maggie took 31 pictures at camp today. 26 of them were self portraits. Flipping through the IPAD pics is a riot. She looks concerned, worried, happy, irritated. confused, delighted and more. She is many things, but Camera Shy is not one of them.

Here she is trying it out with her nurse Mary Joy, figuring it out, figuring it out and then cracking up (but not centering)

The best are when there are girls surrounding her and she is so excited she's turning to look at them, forgetting where the camera is. (I don't think it's cool to put pictures of other people's kids on the internet without their permission, so I will just put up one of her where she is looking for them.)

I will add this one of her and her new friend Jackie, because Jackie is over 18 and one of the helpers at the camp. She and Maggie really hit it off and the two of them had fun with the camera.

Saturday, July 20, 2013

My friend Jeri contacted me the other night ot ask if I was watching the ESPY awards. She told me the Hoyts were on. I had to ask who are the Hoyt's? She reminded me that they are the Father son team who competes in marathons and triathlons. I knew exactly who she meant, but I didn't know their name until she told me.

By the time I turned on the TV, that segment was over. I finally saw the story today and I have to share it with you all. It's is an amazing story. Amazing. And it was good to see all those jocks, who are used to adulation, standing and applauding for a story that all sports fans and athletes should be proud of.

There is a long way to go, of course, but there are so many more opportunities for inclusion of people with disabilities then there used to be. Generally the world of sports is not one of those places. Sure, there are para olympics, and special olympics and all sorts of games for the disabled, but rarely is there a chance to compete with non disabled athletes.* The Hoyts ran right alongside other runners whether they had disabilities or not.

The Hoyts have competed together for 37 years. Not a remarkable story unless you know that son Rick has Cerebral Palsy and dad Dick pushes him in his wheelchair for entire marathons. He also tows him during the swim portions and rides with him during the bicycle portions of the triathlons.

This week the Hoyts were honored at the ESPY's, the Academy awards of the sports world. Before Lebron James was named male athlete of the year, the Hoyts received the Jimmy V award for perseverance in sports. here is the video from the award show.

(You might want to get a kleenex. I've seen it three times and still need kleenex.)

There was a longer video of their races and relationship together shown at the ESPY awards, but it does not seem to be sharable at this time. I am linking to the Huffington post story that includes the video.

Congratulations to the Hoyt's for a well deserved honor. And on behalf of Maggie and many other disabled individuals and their advocates, I want to say a huge THANK YOU to them as well. They probably did more for inclusion in that two minute clip at the ESPY's than a million raised voices have done in 20 years.

____
*I still have the utmost respect for the athletic prowess of Oscar Pistorius who competed at the Olympics despite the loss of both legs. But he is not exactly the poster boy for this any longer. His story took such a terrible terrible turn when his girlfriend was killed and he was accused of murdering her. I don't know where that story stands now.

Wednesday, July 17, 2013

The Dog Days of Summer suggest relaxing afternoons in the hot sun. Those dogs do not live in San Francisco and care for a disabled teenager. Here it is cold and foggy and we will do anything but laze.

Today is the last day of summer school. From 1:15ish today until 7:30ish AM on August 19 I need to keep Maggie entertained during the hours she is normally in school. That is not easy. I'm tired just thinking about it.

Maggie needs a lot of stimulation and entertainment to keep her satisfied. She is a bright interesting young woman who needs intellectual, social and emotional input but because of her physical limitations, she cannot do anything for herself. That means it's up to me (or someone) to provide that input.

Fortunately, Maggie is so engaged that she enjoys every outing, so it's not terribly difficult to find things to do, it's the actual DOING of them that is hard. It's mentally and emotionally stimulating for her and physically exhausting for me. It means that much more lifting and manipulating wheelchairs and just being "on." When you hang with Maggie you have to be "at the ready" every minute to jump in with the suction machine or a feeding or other interventions. There is no down time whatsoever.

Things will be complicated a bit more this summer because of my schedule. I have always worked from home and still do, but now I have something more. For the past several months I've been working outside the house three mornings a week while Maggie is in school. I work as a Parent Liaison at UCSF Benioff Children's hospital, helping parents of hospitalized kids navigate the hospital stay getting information and (non-medical) needs to the people who can help. I like doing it and plan to continue during the next few weeks that Maggie is out of school, though I'm cutting the hours back a little bit. That will take more juggling and will give me even less free time, but sometimes that's just the way it is.

Next week Maggie has Girls Rock! camp every morning. She does love that. I will take her in the mornings and stay on the days I'm not working. She will have to have the nurse with her on the other days. But I am still her transportation. I will pick her up when the camp is over and take her home.

The nurses are here with Maggie, so she will be safe and well cared for, but she will not be entertained when I'm at work. A couple of the nurses will take her for walks if time permits, but others insist she stay in. I yield to their professional assessment/opinion while they're here. But once they're gone, it's up to me again. I will just have to find things for us to do in the early evenings for a few weeks. When Steve is home we can do things together, but most outings will be before he gets home in the evening. Maggie is already looking forward to Summer evenings at the Mall!!

For the first few days entertaining Maggie will be a cinch. Her brother Tim returns today after 6+ months in Chicago. Maggie is beyond excited to see him again and just having him in the house will entertain her to no end. He can take her for the occasional outing as well and that will be so much cooler than hanging with mom.
Of course he will find a new job and have his own schedule, but initially that will be a big help. I'm sure he will do some of the lifting for me as well.

So I am holding my breath and jumping into the dog days of summer. We will hit all the sights and sounds of San Francisco over the next few weeks.

Monday, July 15, 2013

Maggie wanted to go to the mall on Saturday. Nothing new there. We go to the mall often, though not necessarily to buy anything. Maggie is a teenager and just loves to watch the people. Because of both the nurses schedule and the parking issue, we generally hit the mall in the morning when it's less crowded. (Note this is not optimal cool teenager time, but Maggie doesn't care). This is an outing Maggie and I can do together before the nurse gets to our house and Maggie can just hang with mom.

That is, IF we can find a parking place for the van with space to unload the wheelchair.

Believe me, I know where every single handicapped spot is in that mall. There are some in front of Macy's, downstairs in the back behind Macy's, there are a couple by the Williams Sonoma and several over by Nordstrom. In addition there are probably 5 or six in the underground parking. Of those maybe 20 spots, only 5 or so have the designated space to unload a wheelchair. And those 5 spots are almost always taken by a vehicle that could not possibly hold a wheelchair.

There is, of course, no distinction between the wheelchair accessible spaces and the regular "blue" spaces designated for the disabled. Anyone with a placard can use any blue spot, wheelchair accessible or not. That makes sense, there really aren't that many wheelchair vehicles cruising around. And while most wheelchair ramps come out the passenger side, some have the ramp coming out the back of the vehicle. So not even every wheelchair van needs the space on the side.

Still, it's maddening for those of us who actually DO have to unload a wheelchair out the side of the car to see a Honda Civic or some other small car in the wheelchair spot while another blue zone sits empty.

Perfectly legal. Perfectly reasonable. Absolutely maddening.

Saturday as I approached I saw one spot big enough and figured we were in business. There were three other blue spots, none of which would work for me - but I only needed one. There was one car in front of me - a sedan of some sort.

OF COURSE, OF COURSE, he took the one spot I needed. Not only that, I watched as his wife, who did not seem to have any disability at all, jumped out of the car and sprinted to Macy's. He stayed in the car and waited for her. Really? And you have to take up a wheelchair spot to do that? I did not see any placard, and I have no idea if he or she were even entitled to use that spot, but why oh why couldn't they have taken one not meant for a wheelchair.

Now I know you are thinking, why didn't you say something? If he realized he would have happily moved ... and you may be right. But how do I know that? No one likes to be corrected by a stranger. He could be a wacko. I can't play cop or even hall monitor in addition to all my other roles. Further, as a practical matter, I would never get out of the car and leave Maggie sitting there unattended. For one thing, it's dangerous and for another, any cop who happened by would be far more interested in my neglect than in the (possibly) legal if thoughtless parking of the other guy.

So I will use this blog to start an education plan.

If you are not disabled, don't park in disabled spots. Just don't. The ticket is enormous and the karma is even worse.

If you do have a legitimate disabled parking placard, and you are the using it correctly, please don't take the wheelchair space unless there is no other blue zone available.

There are no fines or karma to worry about here, but you would certainly make my life just a little bit easier.

Thank you.

I would love to know the story here.....

Addendum - I've now heard from at least three wheelchair users who do not use a van, so I feel better about seeing the cars that don't seem to be wheelchair users in those spaces. But let's face it, there are an awful lot of non wheelchair users taking them and an awful lot of non-disabled using all types of handicapped spots. If you are using a placard legally and need the space -go for it, that's why it's there. If you don't need the extra space and there's another space, take it. if you are disabled and staying in the car while your wife shops, don't hog a space. If you are parking in a blue zone illegally, I have nothing but disdain for you.

Friday, July 12, 2013

The term "wake up call" has a couple of meanings. It can be a sudden realization that you need to change your ways or it can be literally a call to wake you up in the morning. Either way it's jarring.

When you are in the middle of something and the phone rings it's either an annoying interruption or a welcome relief from whatever it is you were doing. As long as what you are doing does not involve sleeping.

When the phone rings in the middle of the night it is automatically assumed to be something horrific. Hearing the phone in the middle of the night immediately makes me think something terrible has happened to someone I love.

It's not altogether irrational on my part. Our system at home is for the nurse to call the house number if Maggie is in trouble and I will come a'runnin. The phone is right next to our bed and it's faster and easier than having the nurse try to yell for help. I hear the phone and I don't even answer it, I just go straight downstairs. Those calls used to be several times a week, but things have been going very well for Maggie and it's been several weeks since the nurse has needed any help at night.

Around 5 this morning I was sleeping very soundly when I was dreamily aware of a ringing phone. It sounded far away and it stopped after a minute or two. I settled back to sleep and then suddenly was wide awake. What was ringing? Why wasn't it ringing in our room? Could I have grown so complacent with our relative calm that the phone wasn't in its cradle (of course the base rings anyway, but I wasn't thinking straight.)

I jumped up and headed downstairs. The nurse was sitting in the chair next to Maggie's bed looking through her purse for something and Maggie was sound asleep. They were absolutely fine.

Trying to make sense of the fog in my head I considered the options. We do have several phones after all. In addition to the house phone we have a fax phone (quaint, I know) and two cell phones. The cell phones were charging on the hall table as they do every night. Sure enough, I had a missed call at 5:04AM. Now my fear went to Tim who's in Chicago and two hours ahead of us. I checked to see who had called and it just said "unknown caller."

I took the phone with me back upstairs in case this "unknown caller" (who obviously had horrible news for me) called back. No call back. It was probably a wrong number. I tried to go back to sleep, but my heart was beating out of my chest.

Finally I felt myself drifting off when I heard the phone "ding" telling me I had an email. (An ad of some sort.) I was wide awake again. Now it's 5:45 and I have to be up in 30 minutes anyway. But I tried to relax and just as I started to drift off again the garbage men arrived crashing and banging in front of my bedroom window. I gave up and took a shower.

As the water washed over my tired and unnecessarily stressed body I realized I have to teach myself not to go to the worst possible place just because the phone rings. Even when it is Maggie needing help, there may be some drama but it's generally something I can easily fix.

I will work on that. In the meantime, please don't take this as an invitation to call in the middle of the night because I'm a slow learner.

Sunday, July 7, 2013

It is Sunday evening at the end of what was technically NOT a long weekend, but certainly felt like one. I am tired and content.

My plan was to recap the weekend in this post, but I have to limit it because there's too much to report from the 4th of July.

First and foremost, Eddie was home with Grace!! They arrived around noon and Maggie was very happy to see them. Though Steve and I have both seen Eddie a few times in the past months, he has not been home, so Maggie has not seen him since before Christmas. She was very happy and excited to have him here. She hasn't seen Tim since he left for Chicago in January, so there has been a serious big brother drought around here. With Eddie here Maggie World righted itself a little bit.

I tried to take a picture of just Eddie and Grace but Maggie was in the background and this is now my new favorite picture of her. She's still just delighted even while she's covering her face. It's as though she cannot believe her good fortune to get to see one of her boys, and Grace is just a bonus.

We did have the traditional 4th of July barbecue and my mom, my sister Kate and Eddie's friend Chris joined us. Steak and flag cake all around!

But that was the end of the evening. There was one very strange encounter in the morning.

Maggie and I made a quick trip downtown to FINALLY buy her IPAD. She was excited and she impressed the hell out of the geniuses in the store with her opinions and preferences. She picked the color and responded appropriately to several complicated "yes/ no" questions. I was impressed that they actually seemed to "get" her differences and needs and that they respected her intelligence. (Genius recognizes genius) Of course the accessibility expert was asking me a ton of questions for apps etc, and I was passing along the info I learned from Diane, Maggie's former therapist and assistive technology guru at CCS.

That was all good, the strangeness came when we left the store.

There was a man washing windows at a building a door or two up from the Apple Store. That was curious in and of itself, given that is was a major holiday. He turned toward us made a strange move. When you live in a big City, you learn there are times to keep moving. Strange people are everywhere and not all of them are harmless. My maternal instincts (spidey sense) started tingling. I was momentarily worried about our safety. Was he going to strike us with his window washing equipment? Was he going to block our path? What was going on here?

Little did I know what he had in store.

He looked at Maggie and SHOUTED at the top of his lungs,

"IN DA NAME A JAESU CHRIZE, SHE WILL WALK!!!!!!!!!!!!*"

Whoa! Whoa! Whoa! That's a lot to take in on a downtown street when one is flush with the accomplishment of purchasing an IPAD and conversing with geniuses.

I did what any other mother would do and picked up the pace. I nodded my thanks to the man who was absolutely glowing with pride. He was holding his window washing pole as though he was in an honor guard. As it turns out, he meant no harm, but it was a strange strange moment. There was no way I was sticking around to discuss this with him. We were around the corner in record time.

We arrived home shortly before Eddie arrived. After the initial hellos, I shared my story of the evangelical window washer. I told Steve, Eddie and Grace what happened doing my best imitation of the guy. Steve raised one eyebrow, Grace laughed and Eddie said, "Hmm, too bad you didn't run into him 18 years ago. Things would have been a lot easier."

Maggie threw back her head and laughed at that because Eddie is hilarious and Eddie is home and who cares what that weird dude with the long stick has to say.

______________

*I'm typing this the way he sounded. I could not place his accent but English was not his first language.

Wednesday, July 3, 2013

I live in a row house that abuts neighbors on either side. It is smack dab in the middle of San Francisco with blocks and blocks of similar houses surrounding it. You would think, then, that I wouldn't have so many wildlife posts.

No we don't see deer or elk or moose 'round these parts. We have city wildlife. We have had more than our share of raccoon problems and last year Steve trapped a skunk. Now it's gophers.

You should know that our backyard is very small and only half of it is grass - or WAS grass. There's not much sun out her in the avenues and we have to replace the postage stamp sized lawn every five years or so. We are holding off on that for a while though because the gophers will just wreck it.

I think my husband is turning into Bill Murray from Caddyshack. He has tried traps and bait and shaking his fist in an angry way. He doesn't want to use poison because he just wants them to leave, not necessarily to kill them. Besides the chemicals in the poison is not good for the ground and potentially poses a danger to the dog. So we need something else. What can he get that is OK for the environment but will still rid us of the gophers? Hmmm

I was folding laundry the other night and talking to Maggie, not really paying attention to Steve tinkering with something across the room. A box had arrived earlier and he was having fun digging through it. As the thing took shape I had to ask. What the hell is that?

It's a Windmill Mole Chaser, of course! He was delighted. This was an excellent idea to deal with his gophers. And it was green! As the windmill turns it generates a noise that bothers the gophers, theoretically sending them scurrying away to a neighbor's yard to dig.

He put it all together and installed it that very evening. So now I have an elevator AND a windmill in my back yard.

If you look closely at the second picture, you can see the gopher mound next to the bottom of the windmill. Steve fears the mound is actually bigger than it was before he installed it. The gophers are inviting their friends over to check out the new windmill. They are using the energy it generates to watch tv and play video games in their warren of tunnels beneath our lawn.

I have a feeling it's going to power the tiny fireworks show they will have for the 4th of July tomorrow night.

Oh, I shouldn't mention fireworks, that will probably be next,

Have a nice 4th of July Holiday tomorrow. Maggie is excited because Eddie and Grace are coming! She hasn't seen either brother in over six months, so this will make her very happy.

Tuesday, July 2, 2013

Our mobility is dependent on our wheelchair accessible van. It is not the most stylish ride in the world, but it gives Maggie and I the freedom to get out and explore the city and beyond.

We've had this car exactly five years, we got it around the 4th of July in 2008. It is a 2005 model but has very low miles, like 65,000. We are out and about all the time, but we don't go very far. Other than brakes, which we replace frequently, we really haven't had any trouble. The car has a lot of life left on it.

For the past six months, the automatic door locks on the van have not been working. I could still lock the van manually but the automatic switch in the car and on the key were no longer functional. My neighborhood mechanic, who I trust completely, said it had to go to the dealer for that. It was just not worth the trouble and inconvenience for only that so I never got around to it. Lately I've been hearing noises. I took it back to my neighborhood guy and again he told me to get it checked at the dealer because the noise was coming from the engine. Ok, time to bite the bullet.

I was going to Los Angeles on Friday and returning Saturday afternoon so it was a perfect time to leave the car. Of course they didn't even get to it until yesterday (Monday) so we were kind of stuck without the van over the weekend. Great weather meant a long walk in the park on Sunday so that was ok. Actually it was great.

Yesterday I heard from the dealer about the estimate to fix the numerous things he found wrong. I was prepared for him to give me a high bid, perhaps in the neighborhood of $2,000. Turns out I was less than half right. The estimate was in the neighborhood of $5,500, not including the new front tires that I should get immediately.

As they scraped me off the floor I heard the guy tell me that it was an old car, even though it had low miles it is wearing out. According to him it is either fix it or replace it. My head was spinning until he said, "You know ma'am this vehicle is equipped for a wheelchair and they are very expensive to replace." I responded with irritation, "yeah, I'm living the life, you don't have to explain that to me."

Everything changed when he said that. Any inclination I had to trust him evaporated right on the spot. Did he think I didn't know there was a wheelchair lift in the back of my car? Did he think I knew nothing? Did he think I was just going to fork over $5500 for repairs that I now doubt we need?

My doubt only increased when I picked up the car. He drove it to the customer area and said with concern, "you know there's also a high pitched whistle when you turn on the ignition." I smiled sweetly and told him that was the alarm telling you the wheelchair wasn't locked into place. The guy knew nothing about my car.

I drove the car home and despite all its leaks and squeaks, it runs fine. I paid about $200 for the thorough check and the computer repair of the door locks and brought her home. Today I am going back to my trusted mechanic to see how much of the findings are accurate and whether they need to be addressed with the huge fixes the dealer recommends. My bet is that it does need work, but the total will be less than half of that estimate.